stories of hope in a post-fairy tale world

Our new friend, Sprycel

by Lana on June 24, 2010

Hello everyone!

Those of you that want just the “news,” scroll down a bit… those of you that care to hear my “ramblings,” well… continue on.

May I just say that this past week has really tried my patience? It occurred to me at work the other night, as I was tucking in one of my patients who’d finally gotten an epidural and was able to sleep, that this continual-sometimes-minor-sometimes-major stress of the last 18 months has taken its toll on my emotions. I haven’t felt anger, much. I haven’t really fought the diagnosis, I haven’t been that frustrated. But I realized that night that between the continual, am I sick or am I getting better? Am I living or dying yet? my mind and heart was just plain tired. I’m sure that the ridiculously bad weather we’ve been having hasn’t helped, and since I’ve been on chemo I haven’t been able to “cheat”and use “artificial” sun.

So this week of, oh my goodness, my doctor called me at home and said, here, I’ll clear my schedule and you tell me when you can come in because I need to talk to you about your test results…. yep, I spent most of my time NOT thinking about it, not letting myself go there, afraid of drowning in worry and what happens to my family if something happens to me, and who would put Noelle’s hair in a bun if she still wanted to take ballet lessons, and so.many.other.things. I’m grateful for such truly engaging children and for a husband that I love, respect, and truly connect with… the conversations we’ve had this week have required such bravery from him, but he didn’t flinch at any of my questions, or wonderings, or thoughts, or speculations. Nor did he hesitate to help me laugh when I needed to, which was most of the time. He really deserves much more than an award.

But today, driving home from the doctor’s office – though the news was promising, I kept thinking, I just don’t want to think about this any more. I’m tired, I’m done, and I need a break from having cancer. I think most people with chronic illnesses or chronic problems of any kind, so let’s say that’s…. hmm, ALL of us, know what I mean. To get up every morning and try to NOT think about it is taking all of my mental bravery right now. To allow myself only to think about the Big C for enough moments so I remember to pray about it, is really, truly, exhausting.

My prayers have changed, recently, though not by my own intention. Every time I start to ask for healing, the word changes in my head to sustaining. Because, really, all of us, at some point, whether we or anyone around us likes it or not, will not get better. So, really, I think what I’m asking for is to be allowed to live as long as I can so my girls can get as much from me as they can. If healing is in the plan, great. If not, well, then I have to trust that someone, and something else, will be provided to take care of my family.

I guess I have to hold my life ‘out there’ and accept that its really not mine to control. Because, really, who of us gets to negotiate with fate or death or God, or whatever you believe in, to tell them when you’re ready to die? And for some reason, resigning as master of my own destiny has been a really freeing thing.

And now for the NEWS…

Today, we saw Dr. Noble again. He showed us a graph of the philadelphia chromosome levels in my body over the last 18 months and though my levels are much lower than when I started treatment at the beginning of 2009, it isn’t where they want it to be. I am at -2.26, they want at least -3 or less (therefore, a higher negative number). The graph hasn’t budged in a year. So, something is not working. He wonders if that’s perhaps because I have a more complicated mutation than most people, it involves more chromosomes (three instead of two) and there’s an inverted patch in there somewhere too.

So, I am changing drugs from imatinib (Gleevec) to Dasatinib (Sprycel). The good news is there are less side effects with this drug (usually) and we have a 70 % chance that it will work better than Gleevec. However, we don’t know if my system will tolerate this drug as well as it has tolerated Gleevec. Its a newer drug with less data but most studies I have read are very promising. It has a much higher chance of totally eradicating the philadelphia chromosome than Gleevec does.

I won’t start this new drug until July 5th, as we are going to the Oregon Coast with David’s family for the 1st/4th weekend and Dr. Noble didn’t want me starting something new in a country where I don’t have medical coverage, in case I have serious side effects. We’re asking people who pray, to please pray that the drug is effective, that my system (ie. liver, kidneys, heart, lungs) tolerates it, and that the side effects are minimal and I learn to deal with the side effects effectively.

BIG thanks to my friend Sarah who brought us dinner tonight. For the most part, I don’t feel that bad physically – I’ve learned to cope with the bone pain and fatigue (Hint: sunlight and my children’s laughter) (Second hint: wear intense sunscreen as Gleevec makes me photosensitive… not sure if Sprycel will do the same, we’ll find out!), etc. But emotionally it was amazing to come home to pre-made chicken pot pie. Thank you, friend… you have been with us through many, many adventures (cough, kitchen cabinets, cough…) and we love you.

An even BIGGER thanks to all of you who have emailed, posted comments, called, thought of us, or especially prayed for us. I have found people I knew long ago contacting me to tell me I am on their prayer chain or so-and-so is praying-and-fasting for us this week, and my goodness, you humble me. I really needed the support this week, and I am grateful for each and every one of you.

Ok, enough rambling. I will let you know more as I know more.

On a closing note, I know it is really rare for someone my age to have CML, and most people who deal with CML are like, 60 or even 80, not 30, but I actually kind of feel sorry for those who have this but who don’t have little kids at home. I would be so depressed without my girls. They make me smile so much. They don’t let me wallow. They say and do such interesting things. They learn SO fast and are interested in EVERYTHING. And they hug me all the time and say, “wuv you, Mommy.” So a special thank you, Noelle and Elliana, for always being my “pick me up” team.

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>i'm glad you have an outlet where you can share with/vent to us and we can in turn encourage you. you have been in my prayers, just in case i haven't mentioned it before. and i will still be praying…enjoy your time in oregon!

>Thank you so much for updating us. I constantly pray for your healing, you are such a loving and caring person. I'm glad that there was another drug for you to try and I will pray that this works better than the last. Enjoy your vacation with your family. If there is anything that I can do for you please let me know.

>Hi Lana ~ Wayne sent me your link ~ I am the weird Seizing My Day blogger who just started following! aka Jenn ~ of Wayne and Jenn! =)I am so glad you have this link and we can come and see how to pray for you! =) You are strong and courageous! The hymn you refer to and how you apply it to yourself… is very much how I live in regards to our little Sammy! today I had the courage to post his story on my blog =)… after 6 months of blogging =) anyway… I hope it is an encouragement to others… as I am sure your story is ~ praying for you and your family!